Wednesday, January 1, 2014

My Life with 5 Diseases

Each and everyone of us has had a problem, a disease, a sickness we can not overcome, a situation where we feel like there is no hope.  We seek out for help. We pray. We cry in pain, physically and emotionally. But always know, you are not alone.  Millions suffer from so many things.  We do not ask for pity, we do not ask to be ignored.  We want your presence, your loyalty, your love.  We do not like hear ourselves complain and certainly don't want others to get tired of us.  We have to voice our concerns, our problems, our feelings and emotions.  So many words are often left unspoken and we suffer, physically, mentally and emotionally. 

Recently a friend of mine who has Gastroparesis wrote this on her Facebook page.  I had to share this because not only does it speak volumes but the meaning behind suffering brings us closer to God.   

 1 Peter 4:12-13

Suffering for Being a Christian12 Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. 13 But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

I always tell myself that things happen for a reason and that our Lord will not give us what we can not handle.  Sometimes reminding ourselves why we have to suffer is the best medicine.  I was driving home from a doctors appointments out of state and a Christian song came across the radio station.  When you have a moment I want you to listen to the words to this song,  Holy Spirit Have Your Way.  When I heard the lyrics for the first time while tears filled my eyes, I finally was given a glimpse as to why I am going through this all.  I cried out to the heavens and thanked our Lord.  Thank you Jesus for giving me life and allowing me to live longer, Jesus have your way with me.  You see, now that I know that one disease is connected to the other and listening to my doctors comments and concerns and doing my own research,  I knew I had to go through one disease after another to realize and understand that the Lord guiding me in the right direction to my doctors.  There is no alternative without medication to keep me alive and our Lord isn't finished with me yet.

Recently I had another celiac plexus block but this time it was mid spine area.  The procedure is to inject a local anesthetic into or around the celiac plexus of nerves that surrounds the aorta, the main artery in the abdomen. It is performed to block the celiac plexus of nerves that go various organs and parts of the abdomen, hoping to reduce pain in my abdomen. Overall the block lasted about a week.  So it was really nice not to be in so much pain for a short period of time. 

I also recently had an appointment with my gastrologist and I was surprised by his response after discussing the recent findings on my Primary and Secondary Adrenal Insufficiency Disease.  He mentioned that many of his patients who have Gastroparesis also has Adrenal Insufficiency problems.  He indicated that once the patients get on the right dosages of medication such as hydrocortisone or cortef, their symptoms from Gastroparesis progressively gets better.  Now that was awesome to hear!  Can you imagine hardly having Gastroparesis symptoms?  I've gone through so much since 2010 I don't even know what normal feels like anymore but the thought of it sounds absolutely wonderful.  I informed my doctor that I will be rechecked with a cortef injection again in March of 2014.  I should know if I am on the right dosage or if changes need to be made to my medications.  He asked me what made your endocrinologist think you had an adrenal problem.  Well 17 years of having Thyroid Disease and never able to get my TSH levels corrected, she knew something was wrong.  While giving a little giggle only because I seem to baffle every thyroid doctor out there, my TSH levels were 204; the normal range preferred is 0.4 - 4.0. Go figure!  We then discussed my recent celiac plexus block procedure and he was really concerned that I was still having pain on my upper right abdominal area.  Its been an ongoing thing for me.  I have some good days and others I buckle over in pain.   He asked me a couple of questions and came to a conclusion that I may have a problem with my pyloric sphincter.  In March I am scheduled to have an EGD to inject either botox to relax it or use of a balloon to widen my pyloric sphincter.  I have had an EGD before but not for my pyloric sphincter.  My doctor asked if there was anyone else in the family that had pyloric problems.  As a matter of fact, my youngest son had pyloric stenosis when he was only 6 weeks old and had to have emergency surgery to widen his.  Now he is almost 12 and has about a 6 inch scar on my upper right abdominal area.  My doctor also recommended me to be a Gastroparesis clinical research study.  I have to read over all the documents he provided and make a decision.  Of course the research study would not cost me a thing but the time traveling etc might not be feasible. 

I love the fact that I can email or call my doctors anytime and get immediate response.  I was recently diagnosed with pneumonia and had to alert my adrenal/thyroid doctor.  Without hesitation I was given immediate concerns and instructions.  My doctor informed me that pneumonia was the worst illness to have with primary and secondary adrenal insufficiency.  You see, I have to rely on medications to keep my body working.  Normally I take 10 mg of hydrocortisone/cortef in the morning and 5 mg at night but being that I had pneumonia I was instructed to take quadruple my medication equivalent to 40 mg in the morning and 20 at night to help my body fight off the illness otherwise I would have gone into adrenal crisis. 

My son came into my room a couple of weeks ago and saw a photo of me back in 2011 when I went on a cruise with my boyfriend.  He said, "Mom you looked better in that picture than what you do now."  He wasn't trying to be mean, I know this but he is right.  I don't like taking pictures of myself anymore.  I don't even like looking at myself in the mirror.  I see my cheeks caving in, my face thinning out.  Sure makeup covers the ugliness but it doesn't cover the chronic pain and suffering I have endured with 5 diseases.